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First of all, thank you for reading. I'm at my wit's end and I desperately need help.
I'm a 30 year old mother of two little girls; one is 2 years 8mos and one is 7mos. After my second baby I started to have joint pain in my hands and feet. I thought it was a postpartum fluke and settled the matter on the Mommy Forums: a lot of other women experienced it, were tested for RA, it came back negative, and symptoms went away after breastfeeding. Very well, I had always been strong as an adult (not as a child), I figured this would be the case for me too.
Fast forward to 4.5 mos postpartum. Attempted to keep my work from home job (very few hours) while keeping my two small children at home. Burning the candle at both ends. Coffee in the morning, wine in the evening, not eating enough calories or food of good quality. Suddenly, the foods I was used to eating began making me very sick. Eggs in the morning gave me debilitating nausea that lasted all day long. Was it my gallbladder, I wondered. I could not eat most animal fats without consequence and could only tolerate small, vegetable focused meals. I lost 10 lbs in 10 days...while breastfeeding (no, I was not overweight). The situation began to be dire; I was getting weak and felt like I was starving but my body would rebel against processing anything that would nourish it. I saw the gastroenterologist: "Acute gastritis." I was put on ranitidine by the gastroenterologist, 75mg, 2x a day. I asked how long, got a vague answer that I could be on "a long time." Months, I ask? Yes, and brushed off.
I go home and focus on healing, not suspecting gluten at this point. I develop more symptoms: tingling in my feet and hands starting in April, which has developed into pain and numbness as of May. I had gradually been losing sensitivity in my big toe over the winter this year, but I assumed it was some nail abnormality; now I think it was autoimmune. Random stabbing pains everywhere intermittently, more plugged ducts from BFing, chest tightness when I stretch with my arms over my head. My skin looks less lustrous and a little saggy, and I often have a red tint beneath the surface and especially on my face. There have been a couple of times where I have been good for a couple weeks at a time, feeling almost normal, and that was when I was avoiding gluten. However, recently I feel nearly back to where I started.
For the past week, I have dramatically reduced my carb intake and cut out all grains, limiting my food to meat, vegetables, fruit and nut spreads with an occasional glass of raw milk, since I still have some. My chiropractor told me to cut out casein because it is cross-reactive with gluten. I am currently having worse pain in my hands and I'm now having pain in my elbows and stiffness in my knees. My joints pop frequently. It is hard to keep weight on; I'm down to 129, and before I got pregnant I was always 132. I don't know what to eat! I am afraid everything I am eating is poisoning me. I think I am in ketosis. I am constantly thirsty, have dry mouth, my muscles are twitching all over, and without the carbs I had been eating I have been constipated and having very hard stools. I'm trying to drink lots of bone broth and stock every day and stick to the Full GAPS diet. I think my gut has been compromised for a long time: I tested GBS+ with both of my babies. I am hoping that by cutting out the carbs and regularly eating probiotic foods, I can starve the bad bacteria of life. I know a lot of people recommend cutting out dairy because of casein, but I need a good source of strength and calcium and amino acids because I'm a breastfeeding mother.
My PCP told me after a slew of bloodwork, "Frankly, I don't think there's anything wrong with you. Aches and pains happen as you get older." My experience in the medical establishment has been enough to make me cry. I have dragged my two children all over creation from appointment to appointment to fight for every test I've had done. I have an appointment with a naturopath who specializes in nutrition in two weeks, but in the meanwhile I really feel like I am in having a health crisis and I do not know what to do to help myself.
I have been trying to come off of the ranitidine for a long time, unsuccessfully. I will come off of it for a while and then my nausea will return. I recently learned this can be because of people who have been on PPIs for a long time can require a taper drug: https://ndnr.com/gastrointestinal/neuropathy-long-term-ppi-use-a-case-study/ And also that I shouldn't have been using the stuff much longer than 6wks: https://chriskresser.com/fda-sounds-alarm-on-dangers-of-antacid-drugs/ When the stomach irritation kicks into high gear, this seems to be the only way to calm it down.
I've been tested for ANA (lupus, RA, etc.), rheumatoid factor, CRP, diabetes, Celiac's disease and everything has come back normal. I don't have double vision or problems with strength, balance or coordination. I have an appointment with a neurologist and with another gastroenterologist, and I'm hoping to have an endoscopy done. I was exposed to gluten last weekend and that seems to have kicked my body back into high gear, but I'm really not sure that's what's going on. I saw a neurologist in my early 20s about a motor and vocal tic I had, and she told me about the gut brain connection and that I might be ingesting something I was intolerant to. I was young and blithe then and it was all Greek to me, so to speak, and I didn't understand my immune system then. I did do a paleo diet then and felt better than I ever had, but because of the social restrictions it placed on my life I gave it up. As a child, I suffered from constipation, allergies and hyperactivity, which now that I understand the autoimmune concept does sound a lot like Celiac's.
I am struggling both practically and emotionally, I feel like Celiac's disease is a social death sentence. I can never call a friend to meet me at a restaurant again because of the possibility of cross-contamination causing my body to enter its self-destruct sequence. I don't know what to eat. Just a couple of weeks ago I felt like my health was returning, I was regular, good energy, now I feel like death. If you've read this long into my post, God bless you, and seriously, thank you.

Celiac.com 04/21/2017 - Despite sticking to a gluten-free diet, some celiac patients endure persistent duodenal damage; a condition associated with adverse outcomes.
A team of researchers recently set out to determine the prevalence and clinical risk factors for persistent villus atrophy among symptomatic celiac disease patients.
The researchers included S. Mahadev, J. A. Murray, T.-T. Wu, V. S. Chandan, M. S. Torbenson, C. P. Kelly, M. Maki, P. H. R. Green, D. Adelman, and B. Lebwohl.
They are variously affiliated with the Celiac Disease Center, Columbia University College of Physicians and Surgeons, New York, USA, the Division of Gastroenterology and Hepatology, The Mayo Clinic, Rochester, MN, USA, the Department of Laboratory Medicine and Pathology, The Mayo Clinic, Rochester, MN, USA, the Celiac Center, Beth Israel Deaconess Medical Center and Celiac Research Program, Harvard Medical School, Boston, MA, USA, the Tampere Center for Child Health Research, School of Medicine, University of Tampere and Tampere University Hospital, Finland, Europe, the Celiac Disease Center, Columbia University College of Physicians and Surgeons, New York, USA, and with the Division of Allergy/Immunology, Department of Medicine, University of California, San Francisco, CA, USA.
The team conducted a nested cross-sectional analysis on celiac disease patients with self-reported moderate or severe symptoms, who were all following a gluten-free diet, and who underwent protocol-mandated duodenal biopsy upon enrollment in the CeliAction clinical trial.
The team also assessed demographic factors, symptom type, medication use, and serology, to determine predictors of persistent villus atrophy.
Of 1,345 patients with symptoms patients, the researchers found 511 patients (38%) with active celiac disease with persistent villus atrophy, defined as average villus height to crypt depth ratio ≤2.0.
Multivariable analysis showed older age (OR, 5.1 for ≥70 vs. 18–29 years, 95% CI, 2.5–10.4) to be a risk factor, while more time following a gluten-free diet provided some protection (OR, 0.37, 95% CI, 0.24–0.55 for 4–5.9 vs. 1–1.9 years).
People with villus atrophy were more likely to use proton-pump inhibitors (PPIs; OR, 1.6, 95% CI, 1.1–2.3), non-steroidal anti-inflammatory drugs (NSAIDs; OR, 1.64, 95% CI, 1.2–2.2), and selective serotonin re-uptake inhibitors (SSRIs; OR, 1.74, 95% CI, 1.2–2.5). Adjusting for covariates showed that the symptoms alone were not tied to villus atrophy.
Most patients with celiac disease symptoms did not have active disease on follow-up histology. This study showed symptoms to be poor predictors of persistent mucosal injury. The team is calling for further study of the impact of NSAIDs, PPIs, and SSRIs on mucosal healing in celiac patients.
Source:
Alimentary Pharmacology & Therapeutics. DOI: 10.1111/apt.13988

Hi all,
Just as an FYI before I start, we are in the UK so getting to see paediatricians or specialists needs referrals from a GP. Biopsies will rarely be done on children and we also don't usually get a copy/to see blood results.
My two year old son had severe reflux as a baby, then started having severe allergy symptoms, gut issues and rashes etc, when he was one. Removing milk and eventually soya from his diet helped a lot, especially with the rashes, but he still wasn't right and was eventually referred to see the paediatrician. There was a 6 month waiting list and in that time his gut issues got worse and worse, he would scream most of the night, be lethargic and pale through the day, unexplained fevers, bloating, diarrhoea etc. I suspected it was possibly wheat/gluten.
In July we finally saw the paed who agreed with me and ran the antibody and genetic blood tests. We wouldn't get the results until our next appointment and by September we were at our wits end waiting. I decided to remove wheat and gluten from his diet and within a few weeks he started showing major signs of improvement. We finally got the results in November and although the genetic testing came back as positive the antibody tests were negative (I don't know anything more specific than that). Because he was so much better on a gluten-free diet she concluded that he wasn't coeliac, he must be gluten intolerant instead, told us to keep him dairy, soya and gluten free and come back in a year.
After much internet searching it seems that false negatives are quite common in little ones and not uncommon in adults either and that even with a negative antibodies result it could still be causing damage internally. Is this right? I'm confused as to where to go next. Should I pursue an official coeliac diagnosis in a years time, even though that will mean putting him back on gluten? Just today he is suffering after eating a small cake at a party yesterday when I wasn't looking. I don't want to make him sick for weeks on end to possibly have another negative antibody test knowing they wouldn't even consider doing a biopsy.
Sorry, that turned into a bit of an essay!

Celiac.com 08/10/2012 - A diagnosis of Celiac disease is measured mainly by an adverse response to gluten, yet there is very little in the way of data regarding gluten challenge in adults on a gluten-free diet.
A research team recently studied the kinetics of histological, serological, and symptomatic responses to gluten challenge in adults with celiac disease.
The research team included D. Leffler, D. Schuppan, K. Pallav, R. Najarian, J.D. Goldsmith, J. Hansen, T. Kabbani T, M. Dennis, and C.P. Kelly. They are affiliated with Beth Israel Deaconess Medical Center in Boston, Massachusetts.
For their study, the team wanted to address a lack of data regarding the kinetics of responses to gluten, which causes assessment issues in clinical practice and research when gluten-challenge is performed.
For their study, the researchers recruited twenty adults with biopsy-proven coeliac disease. For each participant, the team conducted two run-in visits followed by a 14-day gluten-challenge at a randomly assigned dose of 3 or 7.5 g of gluten/day.
Patients visited study team doctors at 3, 7, 14 and 28 days after the start of their gluten challenge.
The researchers performed duodenal biopsy during the run-in and at days 3 and 14 of gluten challenge.
The team used two pathologists to measure villous height to crypt depth ratio (Vh:celiac disease) and intraepithelial lymphocyte (IEL) count/100 enterocytes. Upon each visit, the team also assessed antibodies to tissue transglutaminase and deamidated gliadin peptides, lactulose to mannitol ratio (LAMA) and any physical symptoms.
Compared to the initial data, results after 14 days showed substantially lower Vh:celiac disease (2.2-1.1, p
Interestingly, gastrointestinal symptoms increased significantly after three days, but had returned to baseline by day 28. There were no differences between the higher and lower gluten doses.
The team concludes by noting that a 14-day gluten challenge at or above 3 g of gluten/day triggers cellular, tissue, and blood changes in most adults with celiac disease.
These findings will help researchers create more accurate clinical trials, and show that many individuals will meet celiac diagnostic criteria after a basic 2-week gluten challenge.
Source:
Gut. 2012 May 22.

Celiac.com 06/29/2010 - Properly diagnosing children with celiac disease in conditions where there may be environmental or other causes for classic celiac-associated symptoms, such as malnutrition, diarrhea, and failure to thrive, can present challenges to clinicians.
A clinical team conducted an assessment of celiac disease blood screens in symptomatic 12 to 36 month-old children. The research team included Inês Cristina Modelli; Lenora Gandolfi; Rodrigo Coutinho de Almeida; Gloria Maria A. C. Araújo; Marilúcia de Almeida Picanço; and Riccardo Pratesi.
They are associated with the Graduate Program in Health Sciences at the University of Brasilia School of Health Sciences, the Pediatric Department at the Brasilia University Hospital, and the Pediatric Research Center and Celiac Disease Investigation Center at the University of Brasilia School of Medicine in Brazil.
The clinicians wanted to assess rates of celiac disease in a group of 12 to 36 month-old children using immunoglobulin antibodies against gliadin (IgG and IgA-AGA), against endomysium (IgA-EMA), and anti-human tissue transglutaminase (IgA-tTG) screens.
For the study, the team enrolled 114 boys and 100 girls, aged 12 to 36 months, all following a gluten-containing diet. The team performed IgG and IgA-AGA, IgA-tTG and IgA-EMA blood tests for each patient. The team took biopsies from all children who showed one or more positive blood test, except those for whom IgG-AGA was the only positive result.
In cases where IgG-AGA was the only positive result, the team used polymerase chain reaction (PCR) HLA genotyping to identify the celiac disease predisposing alleles. HLA genotyping also allowed the team to confirm diagnosis in children flagged as celiac by means of positive serologic testing and compatible biopsy results.
The team found that 131 kids showed normal results. PCR showed the presence of celiac disease predisposing alleles in ten out of 68 children who tested positive on just the IgG-AGA test. Four kids had positive results on all four blood tests, while a fifth child showed positive results IgG and IgA-AGA and IgA-tTG, but showed negative results for IgA-EMA. All five children submitted to jejunal biopsies, which showed classic celiac lesions.
Symptomatic children from 12- to 36-months old that had not been previously diagnosed with celiac disease showed celiac prevalence of 2.3%.
This study shows several things. First, the data reflect the challenges of diagnosing celiac disease in areas where environmental or other causes for classic celiac-associated symptoms might interfere with proper diagnosis. The results also show the advantages of considering biopsies in cases of conflicting or incomplete blood screens in symptomatic children who may be subject to environmental and other mitigating factors.
That such symptomatic children show celiac disease rates that are more than double the general population shows that clinicians attempting diagnosis under such circumstances should be both diligent and exhaustive in their efforts. As it is, symptomatic children with celiac disease are going undiagnosed. To properly diagnose such cases, clinicians should consider any environmental or other causes for classic celiac-associated symptoms that might interfere with proper diagnosis.
There is no reason to assume that these results are exclusive to Brazil. There's no reason to assume these results wouldn't apply anyplace where environmental and other causes might interfere with diagnosis of celiac disease in symptomatic children, including regions of rural and urban poverty.
Source:
PEDIATRIC GASTROENTEROLOGY GASTROENTEROLOGIA PEDIÁTRICA vol.47 no.1 São Paulo